Kids with autism growing up in middle-class families have the worst health outcomes, and it comes down to money
Without wider access to programs like Medicaid and food stamps, many middle-income families with autistic kids struggle to meet their kids' needs.
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- Middle-income households are less likely to have access to resources like Medicaid and food stamps.
- That's one factor making it harder for families with kids with autism to meet their medical needs.
- Public health insurance and professionals who help families navigate available assistance could help.
The 2022 National Autism Indicator Report was one of the first studies that compared metrics across not just low-income versus high-income households. Instead, it separated out household income into three categories: low-income, middle-income, and high-income.
The report, by Drexel's Autism Institute, looked at the intersection of poverty, race, and health outcomes for autistic youth. Along with my colleague Joyce Marrero, I recently spoke with two of the authors on the paper on my podcast, which explores the relationship between parenting, autism, and financial literacy.
What the report found was alarming. Children with autism from middle-income households, or households at 200% to 399% of the federal poverty line, actually had the worst health outcomes out of all income classes.
Middle-income households have access to fewer resources
When we asked why these children were experiencing worse health outcomes, researchers Anne Roux and Dr. Kristy Anderson had some ideas based on past research.
The first, Dr. Anderson pointed out, was that middle-income households are less likely to be eligible for Medicaid. While some states offer waivers for kids with autism from middle-income households, it's far from a universal practice. This leaves a lot of children without access to healthcare that's adequate for their needs — sometimes even if their parents do have private health insurance.
"Public health insurance tends to improve healthcare access over private or uninsured households," Dr. Anderson told us.
Middle-income households also have less access to other state-run benefit programs that can be supportive to overall health, like food stamps and housing programs.
Middle-income parents are less likely to know about resources for kids with autism
Even in states that do offer Medicaid waivers for children with autism, the researchers pointed out that middle-income households are less likely to know about the benefits available to them. If you're low-income and applying for food stamps anyways, you're more likely to be interfacing with the system that provides other benefits — like healthcare.
"It's families who understand how to navigate the system who tend to do better in accessing resources that are made available to them through things like Medicaid," Roux said.
If you're not already interfacing with welfare systems because you think you make "too much" money, you might not be aware that there are programs out there to help.
Ways to close the gap
As Marrero and I are both solidly middle-class, we had to ask about ways this gap in health outcomes could be closed. While we both consider ourselves fairly well-connected to the resources in our area, it took a lot of time and happenstance for us to get to that point.
The number one thing Roux and Dr. Anderson highlighted was the need for healthcare and social system navigators in the community. These navigators would be dedicated additional staff in doctor's offices or in school districts. When a child receives a diagnosis, ideally the parents would be connected with someone who can help them find all the programming for which they may be eligible.
In a lot of areas, nothing like that currently exists. It needs to be a separate position, as doctors and teachers are already maxed out on their own respective responsibilities in their areas of expertise.
Roux also pointed out that during the pandemic, parents in the middle-income bracket whose kids have autism benefited disproportionately from cash assistance programming, given the increased costs they incur just to supply their child what they need in everyday life.
The money that flowed in thanks to stimulus checks, increased child tax credits, and emergency rental assistance programs allowed them to stabilize their finances over the short-term. If programs like these were sustained in the future, it could lead to more access to resources for these families.